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cancer in the sacrum and bones, started with colon cancer 7 years prior

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Comments

  • robinvan
    robinvan Member Posts: 1,012
    shackie said:

    my brothers cancer update.
    thank u all. you r so kind. and so sorry to hear so many ppl have this awful cancer. my brother is on about his 15th radiation. he was able to get the catheder out last weds. but going back to uroligist today becuz he is having some problems, he went last week to get the bag attatched to the side, but when the took out the catherder, he was able to pee. i guess the cancer had shrunk enuf that he cud. he was so happy to get rid of the cathider and no surgery to put it on his side, but this week he had problems, like feeling the urge and cudnt but going enuf to avoid catheder. guess we will see today what happens. i think mayb hes having some problems readjusting to not having the catheder and mayb its not serious, but b4 the tumor was blocking it where he cudnt pee to begin with. doctor is thinking of starting chemo nxt week. he is still so weak. had gained 2 pounds, but i think he lost it again, he is so fragile, i dont kno how chemos gona go, doctor is concerned to, but what else is left, i must say he has a positive dr. my brother is about 5 ft 7 and 125 not good. he is still in severe pain even with fentanol patches percocet in between and couple others dotn tkno the name of. sorry i dont kno all the proper words to this horrible disease. will keep u updated, he still has fight in him. hes just one of those pple who dont go to dr till he has to, and in this case its very sad, and may cost his life. good luck to all of you, and thanks for your support. tina

    Hi Tina
    Thanks for posting. I've been thinking of you and your brother and wondering how things are. I am one of the others here with colon cancer in the sacrum. Your brother's story sounds familiar.

    I had my catheter out last week, after 4-5 weeks in. I could not empty my bladder due to nerve damage caused by the tumour. It became like a big water balloon in my belly! Since the radiation it is much improved and I am able to empty completely.

    Your brother is lucky to have you with him as a support person. I hope you are getting support too. And by the way... have you been screened for colon cancer? It might not be a bad idea. My whole family had colonoscopies after I was diagnosed. SOmetimes it does run in families and early detection is the best way to beat it. Talk to your doctor.

    Bye for now... Rob; in Vancouver
  • robinvan
    robinvan Member Posts: 1,012
    johnsfo said:

    managing pain
    Dear Tina,

    I joined the board just after you started this thread, so I am just now seeing it and responding (although Adrian (acesfo), my partner, has responded). I also have met to the sacrum, and I have found the pain to be among the most difficult aspects to deal with. I resisted taking enough pain meds for a long time because I thought they would cloud my thinking. Fentanyl, for me, relieves the pain without making me feel sedated or "fuzzy headed." It sounds like your brother has the right drugs but not the right dose. Has he asked whether he can increase the dosage? It's hard to do anything or to think clearly when you have pain like that.

    Have you and he investigated cyberknife treatment? That's highly focused high-dose radiation. It has helped me with pain and my CEA reduced dramatically after treatment. Let me know if you'd like for information about cyberknife.

    Best wishes to you and your brother.

    John

    Hey John!
    Fancy meeting you here!

    Pain... I had a very nasty burning "nerve pain" radiating down my left leg as well as pain in the tailbone. The doctors at the radiation clinic prescribed a mix of...
    1.Naproxyn (a non-steroidal anti-inflamatory NSAID)
    2.Gabapentin (good for nerve pain)
    3.Hydromorphone (a type of morphine)

    The morphine dose was 5mg every 4 hrs with 1-2mg/hr for "breakthrough" pain. I must say it really did the trick. I was a little fuzzy after the morphine started. So much so I had to get someone to take services for me. But after a couple of days that cleared and I was able to be both "pain-free" and "clear-headed"!! I stuck with this program for about 4 weeks until the radiation started to take effect. I'm since off the morphine but am still taking the other two. From how I felt I think I could probably have handled a larger dose of the morphine and still been clear-headed. If you are needing more pain management down the road keep it in mind.

    Bye for now... Rob; in Vancouver
  • shackie
    shackie Member Posts: 20
    johnsfo said:

    managing pain
    Dear Tina,

    I joined the board just after you started this thread, so I am just now seeing it and responding (although Adrian (acesfo), my partner, has responded). I also have met to the sacrum, and I have found the pain to be among the most difficult aspects to deal with. I resisted taking enough pain meds for a long time because I thought they would cloud my thinking. Fentanyl, for me, relieves the pain without making me feel sedated or "fuzzy headed." It sounds like your brother has the right drugs but not the right dose. Has he asked whether he can increase the dosage? It's hard to do anything or to think clearly when you have pain like that.

    Have you and he investigated cyberknife treatment? That's highly focused high-dose radiation. It has helped me with pain and my CEA reduced dramatically after treatment. Let me know if you'd like for information about cyberknife.

    Best wishes to you and your brother.

    John

    pain managment
    thanks for the advise, he says thats the worst part of it, dr said he is to weak for surgery. he has had about 15 radiation, not much change in the pain, is now haaving lotsa bladder problems and pain and infection and trouble breathing. chemo to start nxt tuesday, he is very worried that it will do him in, but i just went to a chat room and they advised to do the chemo even tho he is weak. will post about once a week, so sorry for every1, i never kne how bad cancer is till now. thank u all for being so helpful and strong for others.
  • shackie
    shackie Member Posts: 20
    robinvan said:

    Hi Tina
    Thanks for posting. I've been thinking of you and your brother and wondering how things are. I am one of the others here with colon cancer in the sacrum. Your brother's story sounds familiar.

    I had my catheter out last week, after 4-5 weeks in. I could not empty my bladder due to nerve damage caused by the tumour. It became like a big water balloon in my belly! Since the radiation it is much improved and I am able to empty completely.

    Your brother is lucky to have you with him as a support person. I hope you are getting support too. And by the way... have you been screened for colon cancer? It might not be a bad idea. My whole family had colonoscopies after I was diagnosed. SOmetimes it does run in families and early detection is the best way to beat it. Talk to your doctor.

    Bye for now... Rob; in Vancouver

    colon cancer test
    i had a colonospcopy, i guess thats the same thing.
    his catheder came out last week he now has infection there, and in alot of pain from it. but hopeful. will keep posting, thanks for ur help. good luck to u. will b thinking of u. its so hard to kno what to say, so afraid im going to offend sum1. thank u all
  • robinvan
    robinvan Member Posts: 1,012
    shackie said:

    colon cancer test
    i had a colonospcopy, i guess thats the same thing.
    his catheder came out last week he now has infection there, and in alot of pain from it. but hopeful. will keep posting, thanks for ur help. good luck to u. will b thinking of u. its so hard to kno what to say, so afraid im going to offend sum1. thank u all

    Keep in touch
    Keep in touch Tina,
    This can be a good place for support for you and your brother. You are not likely to offend anyone here.

    Hang in there... Rob; in Vancouver
  • shackie
    shackie Member Posts: 20
    robinvan said:

    Keep in touch
    Keep in touch Tina,
    This can be a good place for support for you and your brother. You are not likely to offend anyone here.

    Hang in there... Rob; in Vancouver

    hi every 1
    i dont kno how to start a new thread, my brother is doing sumwhat better. he wanted me to ask a few questions, and ideas about what will help with radiation burns, dr said neosporin, its at his tail bone area so it kinda painful. and what wud it b good to just let it air when possible. i think they cant understand the dr. or dont comprehend. and also do u kno if radiation causes bone damage, i tried to research some of this, but gues i dont comprehind either. he had to take a week off of radiation becuz of the burns, he started chemo last week, he got to take his home, i never heard of that, and i have the exact diagnosis of his cancer. stage 4 pelvic mass metastic adenocarcinoma consistent with colonic gi primary. pools of mucin are seen around well differentiated glands. really dont kno what that means. any info greatly appreciated, i dont kno y doctors dont xplain better, and not make u feel bad for taking there time. this has to b terrifing for ppl. i do go with him at times, i get the same feeling of being a pest. let us worry about it kinda thing, hes got 19 more raidations to do. thanks for any info. tina
  • clw95
    clw95 Member Posts: 1
    robinvan said:

    Hi Tina
    Thanks for posting. I've been thinking of you and your brother and wondering how things are. I am one of the others here with colon cancer in the sacrum. Your brother's story sounds familiar.

    I had my catheter out last week, after 4-5 weeks in. I could not empty my bladder due to nerve damage caused by the tumour. It became like a big water balloon in my belly! Since the radiation it is much improved and I am able to empty completely.

    Your brother is lucky to have you with him as a support person. I hope you are getting support too. And by the way... have you been screened for colon cancer? It might not be a bad idea. My whole family had colonoscopies after I was diagnosed. SOmetimes it does run in families and early detection is the best way to beat it. Talk to your doctor.

    Bye for now... Rob; in Vancouver

    My Daddy
    Rob,

    My father has anal cancer. It was first diagnosed two years ago. He underwent surgery to remove the tumor, as well as chemo and radiation, but it's back. The tumor is now attached to the sacrum. Chemo seems to have shrunk size and surgery seems to be the only option for cure. The oncologist he is currently seeing will not be performing the surgery, as he has never done one before, so we are left waiting to find a doctor that will/can. Also, my dad had a colostomy four months ago.

    I don't really know where to start. My parents are very private people and insist on keeping this to themselves (even though I am 37) for fear that I will worry too much. What kinds of questions do I need to be asking the oncologist? What type of surgery did you have? Issues/problems/complications?

    Any information that you could pass along would be greatly appreciated! Like I said, I am lost at this point and do not have a set direction. Let me know what you think! Thanks!

    Cammie in Dallas
  • johnsfo
    johnsfo Member Posts: 47
    clw95 said:

    My Daddy
    Rob,

    My father has anal cancer. It was first diagnosed two years ago. He underwent surgery to remove the tumor, as well as chemo and radiation, but it's back. The tumor is now attached to the sacrum. Chemo seems to have shrunk size and surgery seems to be the only option for cure. The oncologist he is currently seeing will not be performing the surgery, as he has never done one before, so we are left waiting to find a doctor that will/can. Also, my dad had a colostomy four months ago.

    I don't really know where to start. My parents are very private people and insist on keeping this to themselves (even though I am 37) for fear that I will worry too much. What kinds of questions do I need to be asking the oncologist? What type of surgery did you have? Issues/problems/complications?

    Any information that you could pass along would be greatly appreciated! Like I said, I am lost at this point and do not have a set direction. Let me know what you think! Thanks!

    Cammie in Dallas

    sacral met
    Dear Cammie,

    I'm sorry to hear of your father's cancer at the sacrum. I have had two recurrences at the sacrum: the first in the soft tissue adjacent the the sacrum, the second extending through about 2/3 of the bone itself as well as surrounding areas. Here's a little information I've gathered through my doctors and treatments -- hope it helps your father and your family.

    A sacrectomy is really serious surgery, with some possible side effects that could be hard to deal with (loss of bladder or bowel continence; loss of sexual abilities; weakness or paralysis of the legs; skeletal instability that would require a walker or other assistance to stand and move around). Those are all risks, not certainties, but they need to be investigated. I asked one of the surgeons I consulted what the benefits of a sacrectomy are, though. He responded that if the cancer is reasonably low in the sacrum (S3,S4,S5) and reasonably contained, the surgery can be curative. Even with the risks, that's pretty persuasive. So the questions I would ask would be of surgeons, not oncologists, and I would ask where in the sacrum the cancer is; what the risks for serious side effects are given the size and location of the tumor; whether he or she considers the goal of the surgery curative (or palliative).

    Further up this thread you'll find information about another treatment option called cyberknife treatment (sometimes called radio surgery). The cancer in my sacrum was too extensive for traditional surgery, so I had cyberknife treatments in late September. The goal of the treatments was to relieve pain. I had severe pain caused by the tumor putting pressure on nerve roots, and now that pain is remarkably reduced. I have also had some real problems from radiation damage, though, so I would ask the cyberknife team what the possible radiation risks are to surrounding tissue.

    Your post is really a new topic -- so much is specific to your Dad's particular cancer -- that I would recommend starting a new thread. I think more people will see and respond to your post that way.

    Please PM me if you'd like to correspond privately.

    Best wishes to you and your family.

    John
  • charliesangel
    charliesangel Member Posts: 26
    johnsfo said:

    sacral met
    Dear Cammie,

    I'm sorry to hear of your father's cancer at the sacrum. I have had two recurrences at the sacrum: the first in the soft tissue adjacent the the sacrum, the second extending through about 2/3 of the bone itself as well as surrounding areas. Here's a little information I've gathered through my doctors and treatments -- hope it helps your father and your family.

    A sacrectomy is really serious surgery, with some possible side effects that could be hard to deal with (loss of bladder or bowel continence; loss of sexual abilities; weakness or paralysis of the legs; skeletal instability that would require a walker or other assistance to stand and move around). Those are all risks, not certainties, but they need to be investigated. I asked one of the surgeons I consulted what the benefits of a sacrectomy are, though. He responded that if the cancer is reasonably low in the sacrum (S3,S4,S5) and reasonably contained, the surgery can be curative. Even with the risks, that's pretty persuasive. So the questions I would ask would be of surgeons, not oncologists, and I would ask where in the sacrum the cancer is; what the risks for serious side effects are given the size and location of the tumor; whether he or she considers the goal of the surgery curative (or palliative).

    Further up this thread you'll find information about another treatment option called cyberknife treatment (sometimes called radio surgery). The cancer in my sacrum was too extensive for traditional surgery, so I had cyberknife treatments in late September. The goal of the treatments was to relieve pain. I had severe pain caused by the tumor putting pressure on nerve roots, and now that pain is remarkably reduced. I have also had some real problems from radiation damage, though, so I would ask the cyberknife team what the possible radiation risks are to surrounding tissue.

    Your post is really a new topic -- so much is specific to your Dad's particular cancer -- that I would recommend starting a new thread. I think more people will see and respond to your post that way.

    Please PM me if you'd like to correspond privately.

    Best wishes to you and your family.

    John

    For johnsfo
    Hi there John,

    Hopefully you can help me shed some light with my fathers staging, here is a brief history;

    13 years ago my father had a rectal tumor removed. He was stage 2 and had chemo and radiation and was given the all clear. He remained cancer free up until now.

    Around 18 months ago he started having sciatic pain and had some tests done which showed some degeneration in the bone which they put down to aging and left it at that. The pain got worse and he had an MRI done 3 months ago which showed a sacral tumor in the S1 and S2(2cm) and a very small tumor at his anastomosis site (1cm). His oncologist told him it was a rectal cancer recurrence and said it was inoperable and he would be ok for 6-12 months as he was so healthy, but he would eventually subcum to this disease.

    He said as he had his max radiation years ago he could not have anymore and chemo would only help control his cancer for a while.

    After doing some research I happened across one of your posts about cyberknife (cyberknife is not available in Australia) and I had not even heard of it nor had anyone I knew. Our closest cyberknife clinic is in Malaysia so after reading your posts and doing more research I hopped on a plane with my Dad's scans and met with a doctor at the wijaya international medical centre who said he is treatable with Cyberknife, 3 weeks later we returned to Malaysia and my father had treatment.

    We now have a new oncologist who is far more aggressive and we are hoping that after the 6 months of chemo he is about to have will help and then he can have surgery.

    Firstly, I wanted to let you know that you have helped someone you never even met immensely, possibly even saved his life!!!!!!! For that, I thank you very much.

    Secondly, as my father sounds to be in the same position as you I was wondering what stage of cancer you are considered to be in? He has the one tumor in the sacrum and a second very close by at his anatomosis site. He has none LN involvement and no other mets. His CEA before cyberknife was 33. Is this stage 4? It's the one thing none of the doctors have told us, what stage his is at and I don't want to ask during his onc appointments as I want him to stay positive, however I would like to know:)

    Many thanks in advance and I wish you all the best in your fight:)

    x